I wrote this post coming to the end of a tough week for myself. But the motivation came from the people around me – since the election results came through I’ve seen that people are disillusioned and worried for their future…
I want to remind people that difference is a positive, something to celebrate.
Our differences diversify us and make us stronger. I hope that if people can truly celebrate their differences in ability they will have the strength to come together off social media and to begin to fight against welfare cuts with a more united front.
1. It’s okay to stand out from the crowd
Its been a long while since I’ve been the kid in the multi-coloured polo neck (my mum always let me be an original). These past few years I’ve become increasingly obsessed with following the crowd: fashion, shoes, bags… An unhealthy relationship with my Monsoon points card.
But seriously, I’ve been hung up about my weight and tried fad diets and otherwise been a sheep (yes… BAA.).
The first few times I went out in Wilma I was mortified. Spent hours staring at my reflection in everything, trying to work out how to be cool in a wheelchair.
I have now developed a *** it attitude. And you know what? It’s paying off? I don’t remember the last time I cried because I was ‘fat’. Yes I admit to still double checking that outfits are wilma-proof – heads up walking world, nobody makes fashion for wheelies… But I’ve learnt that people actually respect and prefer you as the original you are. Not someone you’re desperately trying to be.
2. Grab life with both hands and don’t let go because life is never easy
I’m hopeful that I’ll be the lucky one who gets up walking after my 12 week wilma stint. But I don’t know, and that’s okay (see next point). But whatever happens I have massively learned that when your own body starts attacking your dreams you have to fight even harder to achieve them.
I want to travel – I have a million places I want to go. I’m not going to let EDS stop me, I’m just gonna have to learn to take it slow.
I want to do the things I love – I started my degree and fell in love with social work. 3 years on I’m feeling disillusioned. But I still love people, and ain’t nobody going to tell me that a deafie in a wheelchair can’t work with people better than half the other people out there. I’ll do what I enjoy, not what people expect me to.
It’s important to have goals that you can put everything into achieving (or maybe that’s just me…) It just so happens that Deaf Awareness week and EDS Awareness month clash. My goal is to swim (cos I can’t run…) 2.5km to raise money for NDCS and EDS UK next year. And if I can’t do it next year, I’ll do it the year after.
3. Being the kid in the wheelchair is a’okay
Oh yes it is. And you know why? Because I get out twice as much now I’ve got Wilma as I did before. In my eyes, that makes a wheelchair enabling – not disabling.
Not one person I know sees their wheelchair as a negative. Don’t ever let anyone tell you “it must be terrible to be stuck in that chair so young”.
Nu’uh.
EDS is terrible, some days I feel like it’s ripping my life away from me while I lie here watching. But this wheelchair is my life-saver. Without it I wouldn’t be at uni, I wouldn’t be out with my friends and I certainly wouldn’t have been sat in Eds Diner eating cheesey chips.
A wheelchair is a positive in its own way.
So these three points may sound cliched but I never believed they could be 100% true until recently. The people I have met because of how EDS and deafness have effected me are the most positive and remarkable people around. They can battle shit every day and still be there to help me, and others, when we need a pick up.
The Tory government wants to make people with a different level of ability ‘disabled’. But at the end of the day only society can do that – because it’s societal perceptions and barriers that are disabling. Not the difference itself.
If enough people are brave enough to stand up for what we have a right to – support at work, access etc. then the government must answer to its people.
To the mums on Facebook who are scared for the future of their deaf or disabled child, to the deaf teenager or adult, to the Zebra Warriors out there, the Spoonies and all those labelled as ‘disabled’ or ‘chronically ill’ we have to DO something. However hard that might seem. Because there are millions of voices out there that deserve to be heard.
Email your MP. Sign petitions. Join marches if you can. Speak to charities like NDCS and EDS UK who are campaigning against welfare cuts.
Someone (somewhere) once said “be the change you want to see”. I like that.
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Tim
May 20, 2015
Great post, Ni.
Ni
May 20, 2015
Thanks Tim ☺️